What to expect of PBT simulation week at the Paul Scherrer Institute
I came out to the Paul Scherrer Institute (PSI) in Villigen, Switzerland, in September 2016, for the simulation (preparation) week, preceding a few weeks of proton beam therapy to treat what remained of a clival chordoma. This page is one of handy hints for anyone who is preparing to do the same or similar, and will, I hope, be of help to you. I will bullet point the hints so it’s easy to use…
- Your NHS may be funding your treatment. This means that someone in your NHS Trust will have the job of helping you to get organised with travel, accommodation etc. I heard from my NHS contact (Tracey) the day after the PBT application was accepted, so keep a lookout for that. The only thing that didn’t happen was reservation of a car park space at the airport for the week, because I’d forgotten to tell my contact that we would be leaving our car there. As we arrived to park, I realised that we’d overlooked that part in amongst getting ready to fly out. Thanks to Tracey at my NHS, it was sorted it and astronomical costs were avoided.
- The Paul Scherrer Institute is a huge place, a world-leading centre of research and activity for energy, matter and health. The proton beam therapy centre is one of dozens of industrial and unusual looking buildings. You might be gripped by fear, disbelief, astonishment, when you first approach it, as it looks a bit like you might imagine a space project would look. Probably so would any other such research institute you might be referred to by your NHS, perhaps in another country. Be assured there is no Dr Spock here (not one I’ve met anyway), just lots of clever, scientific and, in my experience, caring and skilled people. So don’t expect to be beamed up, Scottie! (You might have to look this line up if you’re not a 60s/70s Star Trekker). The medical centre you’ll be going to is one part of lots of types of work going on here.
- Write down and ask questions that you may have, as knowledge about what is happening to you is much safer and accurate than your imagination. The medical team here are specialists and world leaders in their fields. This knowledge, along with honest, accurate information and answers has given rise to a massive feeling of trust in my doctor, and the understanding that I am receiving the best treatment I could possibly have for my condition. That, for me, is a reassuring thought.
- In simulation week you will have pieces of equipment made for you which will help you to keep still during your treatment. In my case it was a bite block and a pillow which sets hard to the shape of my head, both to keep my head absolutely still. The processes may seem very mechanical but the upshot of this is that you will have the right bits and bobs to make your treatment spot on accurate. (The photo here is from the information centre at PSI).
- It’s really useful to have a car during your simulation week, as the PSI is not in the centre of a major town or city. If you are able to hire a car and can afford to, or have a carer who is a driver etc, then having wheels over here will make everything so much easier for you and means you can do other things besides come to appointments at the PSI. We hired one from Europcar and it was cheap,(and upgraded free when we got here!) in perfect condition and situated at the airport.
- I had three free days with my husband during the simulation week at PSI and he had thankfully researched thoroughly and decided on some things to do whilst we were here that were fun and uplifting. We went to Zurich for a day and swam in the Zurichsee –it was amazing. We climbed to a high point to view Zurich, and we drove to The Black Forest and had a picnic by a lake. We also walked along riverbanks, visited a couple of interesting towns and went to Baden in the evenings. My advice is to research things to do if you can, or let someone who can do that do it for you. I was so fortunate and happy that my husband had done that- it made all the difference in the world.
- The cost for yourself of coming to Switzerland as an NHS funded patient for even a week is surprising. Switzerland is very expensive in every aspect (toiletries – very expensive indeed) and just because you have been referred for proton beam therapy does not mean you have loads of money to spare. Your NHS may have funded your treatment, travel, accommodation, but your usual, everyday living expenses are met by yourself, as they would be if you were receiving treatment in your own country. Villigen (the nearest town to PSI) is not far from the German border, and Germany is much more like the cost of living in the UK. Find ways to keep the cost down if you can. In simulation week you will most likely be in a hotel rather than an apartment, which means eating out in the evenings might be your only option, so again research in advance. There’s a lot to be said for once or twice smuggling some good cheese, bread and olives and into your hotel room to keep the cost down.
- Lastly, although you might be coming out here for medical reasons, it’s also okay to enjoy yourself whilst you are here as far as is possible for you. It’s good for your well-being to do uplifting things in a new country in-between your appointments at PSI, and important to keep active. If you wouldn’t spend a week at home focusing only on the day you have to go for scans and find out your next stage of treatment, then why would you do that anywhere else? I am so lucky and thankful that my husband was able to come with me for this week and he made it really special. If you are able to, bring a carer out with you who can do a similar thing. Make it memorable.
P.S. Try and learn a little German before you arrive here! Auf Wiedersehen!